Our GBS Journey

Life can change so fast without any warning. On March 25th, a syndrome called Guillain-Barre rocked our world. That Monday morning was just like every other school morning. I woke Kylee up at 6:30am to start getting ready for school. She ate breakfast, got dressed, and then as I was doing her hair in her bathroom she randomly said "Mom, this side of my face won't smile" (pointing to the right side of her face). We stared in the mirror for about 2 minutes trying to have her make different faces but that right side refused to move. In my mind, I immediately went back to a picture that my friend had posted on facebook about 2 years ago. One side of her face was droopy and comletely paralyzed and she had something called Bells Palsy. I couldn't remember at the time what it was called so I called my sister-in-law Becky and she confirmed my thoughts...that it might be Bells Palsy. So I called Kylee's pediatrician right away and got in about 2 hours later. Dr. Will saw her and after examining her, he also had the assumption that it was Bells Palsy. However, BP is extremely rare for a child Kylee's age. He personally had never seen a child this young with BP. So he consulted with another doctor (Dr. McClure) and they both agreed that she should get a CT scan to make sure nothing more was going on. This is when the fear set in for me. I'm so thankful that David has Monday's off because he was with us for each visit. I don't know if I could have emotionally handled all that went on that day without him by my side.

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So off to the imaging place we went to get Kylee's CT scan. On the drive there both David and I put in a few phone calls to our parents and other family members to let them know what was going on. Once we pulled into the parking lot, my emotions and fear got the best of me and I couldn't help but cry. I didn't want to do that with Kylee in the car because the last thing I wanted to do was instill my fear in her. Thankfully David acted quick and pulled into the back of the imaging place and gave Kylee a priesthood blessing. It instantly calmed me down and set a peaceful tone in all our hearts. We then went into the imaging center to get this scan done. Kylee was a little nervous once she saw the big round machine that she had to lay down and slide into, but the imaging techs were amazing and helped Kylee get through it. She was a champ and didn't shed a single tear. As we were leaving, the receptionist informed me that the doctor's ordered the scan STAT and that we should have results in about an hour.

(Kylee's face Monday morning at the pediatrician's office)

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After we left the imaging center, we went to Walgreens to pick up her 2 prescriptions that are used to treat Bells Palsy. Kylee was fine, other than her facial paralysis, so we decided to take her to school. David and I went home, started doing some research online about BP, and just waited and waited to hear results of the CT scan. We didn't get them back in an hour like the imaging receptionist had told us. It was 6 hours later! But hearing negative and good results made it worth the wait. Kylee's brain was as good as gold! Thank goodness! I could finally breathe!

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 We are so thankful for doctors who want to go the extra mile to ensure our daughter's health because getting a good result from the CT scan wasn't enough for them. They wanted us to go see a neurologist just to make double sure everything was ok. Thanks to my best friend Jaime, she referred us to a pediatric neurologist she had heard of and that had a great reputation. So we called her and they happened to have an opening 2 days later. This is unheard of because normally you can't get in for weeks. We knew that our sweet girl was being watched over from above.

(Lots of cuddles of course...she has been glued to my side ever since)

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Monday night came and things changed for us and we knew something else was most likely going on with Kylee. She had intense pulsing pain throughout her body. It would shift from her neck, to her back, to her legs, to her arms, and even her stomach. She literally tossed and turned and cried every 30 minutes. We tried tylonel, heating pads, ice packs, massages, EVERYTHING! Nothing would soothe her. Tuesday came and we kept her home from school due to the fact that she was exhausted from not sleeping. The pains didn't seem to happen nearly as often during the day. It would only affect her about once every 3 hours or so.

(Getting lunch Tuesday afternoon at Jim's Burros! She couldn't make a puckered lip face without using her hands)

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Then around 6pm on Tuesday night I started to notice the left side of her face tightening up. By 8pm, her entire face was completely paralyzed. I researched bi-lateral Bells Palsy (where both sides of the face lose functionality) and it said that bi-lateral BP affects less than 1% of all BP patients. Ok, first we hear by doctors that children Kylee's age getting BP is extremely rare...and now to read that less than 1% get bi-lateral paralysis!!! Freaked out was a major understatement of what I was feeling when I read that. I called the on-call doctor and he called back within 2 minutes of my message. He said that he wanted me to take her to the ER right away. David was at the temple with the youth for the Easter Pagaent so I was all alone. I packed Carter up and called our dear amazing friends Jamie and Travis. They willingly wanted to take Carter for us for the night and then off to the hospital we went. David was only 10 minutes away from the hospital so he met us there. Endless prayers were rushing through my mind and heart during that 30 minute drive. I just couldn't believe what was happening to my sweet angel girl.

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When we arrive at the hospital, we checked her in and they took us straight back to a room (despite the fact that there was a waiting room FULL of people). Our pediatrician had called in advance and made sure everything was prepared for us when we got there. Again, AMAZING doctors that I now know have been placed in our path for a reason. They drew blood and did some other tests on her. Her blood pressure was high, they found she had a UTI, and her blood showed a high levels of "something or other" that was beyond my understanding. But the doctor said it wasn't concerning or urgent to act upon. He knew we had our appointment with the neurologist the next day so he didn't rush an MRI or spinal tap. He wanted the neurologist to make that call. So after about 6 hours, we left with no answers but also not many concerns either. We were just anxious to hear what the neurologist had to say.

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Tuesday night was another nightmare full of tossing and turning and painful cries from our girl. We were anxious to get some relief for her so that she could sleep peacefully and start her recovery process.

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Wednesday finally came and we went off to the neurologist with high hopes of answers and relief. She ran some physical tests on her and after all was said and done, Dr. Haynes (ped. neurologist) came to her conclusion that Kylee might have a form of a syndrome called Guillain-Barre (GEE-YAN - BAR EY). There are MANY symptoms that come along with Guillain-Barre Syndrome (GBS), but the only symptoms Kylee was showing was her facial paralysis and the random shooting pains throughout her body. Kylee passed all other physical tests though and wasn't showing any "serious" signs of GBS, so hospitalization wasn't necessary and Dr. Haynes wasn't in an urgent rush to get Kylee immediate medical attention. She ordered an MRI to confirm whether or not Kylee had GBS. But even the MRI wasn't ordered "rush". We didn't end up getting it scheduled until Tuesday of the following week (6 days away). So we were able to set our worries aside due to the fact that a professional neurologist wasn't too concerned. Dr. Haynes did prescribed Kylee some medicine to help calm her body at night so she can sleep. We were praying that would work! Well....it didn't! We had another 6 LONG nights of pains and cries.

(At the neurologists office...Carter wanted to get up on the table with his Sissy)

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Because of Kylee's lack of sleeping at night and her random shooting pains, we kept her home from school all week. Her school has been so amazing and understanding with Kylee's condition. She would sometimes go to school but only last a few hours. Her teacher had her classmates made Kylee sweet "get-well" cards and she hand delivered them herself. It was right around Easter so her teacher also brought her a purple bunny. Everyone has been so amazing and supportive! Kylee is so blessed with such amazing people in her life.

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Due to her entire face being paralyzed, she doesn't have the ability to blink normally (or as often) and she can't close her eyes all the way at night. So to prevent her eyes from drying out and damaging her corneas, she has to sleep with a mask and ointment in her eyes. It's not fun for her and the goop in her eyes makes it uncomfortable to sleep. All while she was still tossing and turning from shooting pain. We were very anxious to get the MRI so we could have more answers and find the relief she so desperately needed!

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As the days went on, we noticed that Kylee was starting to get some movement back in her face. The left side was doing much better than her right, but still...both sides were making slow and steady progress. We met with Dr. Haynes again that Friday and she was very impressed with Kylee's facial progress. Kylee continued to not show any other new symptoms that would indicate that she has a bad form of GBS. But Dr. Haynes still believed she had a form of it. Again, the MRI would prove this! So we kept waiting.

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Easter came and she had even more movement in her face! Just look at that smile! We were so excited to see the progress she was making.

 She was able to make it through an hour of church on Easter Sunday...but during that hour she had headache pulses in her forehead and she was really tired, due to the fact that she still wasn't getting much sleep at night from the pain.

 Since Monday the 25th (when all this began), her body has been getting gradually weaker and weaker each day. Which is another sign of GBS. Her back is the most effected body part. She is incredibly stiff and can't even bend over to put her socks and shoes on. So I have been treating her to personal hair washing treatments so she doesn't have to stand as long in the shower. She loves getting her hair washed. Who doesn't right!?

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A sweet picture of the two most important little people in my life! Our family bond has definitely gotten stronger since all of this has began. Just a confirmation that trials are for our own good and make us stronger!

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Throughout all of this we have had more support, love and prayers than I can even comprehend. Our family, friends, and ward family have been the most amazing support system this girl and our family could ever hope for. And it seems that every time Kylee has a melt down because of not wanting to take her medicine or just because she is in pain, someone shows up on our doorstep with goodies and good cheer. I can't even begin to thank everyone for all of their incredible kindness!

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Tuesday, April 2nd...MRI time! The day we had been waiting for so we can finally get the results we have been dying to hear....so that we can get on with the recovery process accurately. We got to the medical center at 8am and got all checked in. At about 8:30am, they took us back and got Kylee prepped for the 2 hour MRI! This was a 3 part MRI so it was going to take triple the time as a normal MRI. They wanted to scan her brain, spine, and lumbar region (back). She, of course, had to be sedated for it since she was required to lay completely still for the entire length of the MRI.

(Just look at the progress of her smile on this day!)

 (All prepped and ready for her MRI)

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The MRI did end up lasting about 2 hours but as they were waking Kylee up, she had a little "freak out" session and they had to medicate her more so she would come out of the anesthesia more peacefully. So we weren't able to see her until 3 hours after they initially took her back. But she woke up fine and we went home, where Kylee slept for an additional 4 hours. We were so happy to see her sleeping so peacefully. It was the best sleep (or only sleep) she had gotten in 8 days!

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An hour after the MRI was complete, we got a call from Dr. Haynes (neurologist). Again, amazing doctors who are prompt and thorough! She got the MRI results and looked over them with a team of specialists. They all confimed that Kylee did not have any form of Bells Palsy, and definitely had Guillain-Barre Syndrome. We were happy to have those final results, but now we were nervous and uncertain of what was to come. Now that we had this confirmation, Dr. Haynes prescribed a new medicine to help calm Kylee's nerve pain. We went to Walgreens and gave her the first dose of it around 7pm that night. And Kylee didn't make ONE PEEP all night!!! It was as if she was a newborn who slept through the night for the first time. I was so relieved, happy, excited, and RESTED because I too was able to sleep for the first time in 8 days! I woke up and felt like I could run a marathon! Ha!

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We met with Dr. Haynes again the next day so she could go over some things with us and to examine Kylee again to make sure she was still progressing and not digressing. Kylee was still making progress in her face and we felt like we were finally heading in the right direction with the right medicine and so forth. Even though the serious risks of GBS are there, Dr. Haynes feels very optimistic that Kylee won't need to be hospitalized because she continues to make progress on her own and her body isn't digressing.

(Playing on the roller chair at Dr. Haynes office)

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April 6th.....first sign of digression. Kylee woke up Saturday morning (April 6th) and her entire face was back to zero functionality. Just the day before, she was up to almost half of her smile back. But Saturday morning she had complete full facial paralysis again. It was very concerning to us and extremely sad because just as I was getting my girl's smile back, it slipped away over night just like that. We called Dr. Haynes to let her know of this set back Kylee had taken and she informed us that it is normal for patients to fluctuate early on in their diagnosis. Keep in mind that this was day 13, and yet, this was still considered "early" in her diagnosis. GBS can last months to years for patients to fully recover. And on that long road, minor and serious symptoms can fluctuate. We are just thankful that so far, Kylee has only shown minimal symptoms and not serious symptoms. We have to keep monitoring her closely to make sure she isn't starting to digress in specific areas such as her swallowing and breathing. She has missed quite a few days of school since this all began. But again, her teachers and school staff are being so supportive and amazing. And even when she has bad days at home, she still finds the strength and energy to finish all her take-home work and homework from school. She is such a fighter and is staying as positive as she can, even through the hard times.

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This truly is harder on me and David as parents than it is on Kylee. It breaks my heart to see her body so stiff and not able to do the normal daily activities that she used to do. She has had to drop out of dance and softball. She is the most flexible dancer in her dance class but now she can't even bend over and touch her knees, let alone her toes. She can't squeeze the shampoo bottle to get shampoo out. She still gets random nerve pain pulses between her doses of medicine, and we have to just help her breathe through it because she can't have more medicine than what has been prescribed. She sometimes cries to me and asks how long this is going to last. She laughs and cries but yet her face shows absolutely no expression. It absolutely breaks my heart to see her this way. But she still has her sassy, spunky, fun, energetic, and beautiful personality and she continues to take one day at a time with a positive attitude. She is amazing me with her strength. She is my rock. I didn't think it was possible to love her more than I already did, but since March 25th, my eyes and heart have been opened to a whole new level of unconditional pure love for my sweet girl. We feel the prayers of everyone! It is carrying us through daily. I know my love for Kylee is just a fraction of the love that her Heavenly Father and Savior feel for her. Having that knowledge helps get me through the hard times because I know they are looking out for her and carrying her in their arms. We continue to pray everyday that she won't digress. We continue to pray that she will heal fast. And we pray for the 3 children Kylee's age in the hospital who are suffering the serious affects of GBS at this time. We are thankful for this trial and that it has brought us closer together. It has taught us so much and opened our eyes. Life is fragile. It can change at any minute. We have learned to rely on our Savior more and to never take his love for granted. God and family are everything! And we know that Kylee is going to kick GBS to the curb soon!